Despite progress in end-of-life research, important aspects of
this life stage remain poorly understood, according to a panel convened
by the National Institutes of Health. The panel found that for many
Americans, a lack of continuity of care and poor communication between
healthcare practitioners, patients, and family members make the
end-of-life period a struggle.

In light of the projected dramatic increase in the number of older
adults who will require end-of-life care, the panel called for the
rapid development of research infrastructure to improve our understanding
of what works and what doesn't in different groups of patients,
and enhanced resources to deliver quality care to patients and their
families at the end of life.

"We can begin by refining and agreeing upon our definitions
of 'end of life,' 'palliative care,' and 'hospice'  the terms have
been used inconsistently, and often interchangeably, which hinders
not just the research enterprise, but effective communication between
providers and patients as well" said panel chair Margaret M.
Heitkemper, Ph.D., R.N., F.A.A.N., Professor and Chair of the Department
of Biobehavioral Nursing and Health Systems at the University of
Washington School of Nursing in Seattle.

These and other findings emerged from the NIH State-of-the-Science
Conference on Improving End-of-Life Care held December 6-8, 2004,
at the NIH campus in Bethesda, Maryland. The conference brought
together national and international experts to clarify for healthcare
providers, patients, and the general public, key questions regarding
the definition of "end of life," the factors that contribute
to improved or worsened outcomes for patients and their families
at the end of life, and future research directions for improving
care at the end of life.

The panel also concluded that the design of the current Medicare
hospice benefits limits the availability of the full range of interventions
needed by many persons at the end of life. The panel cited as specific
problems with the benefit the eligibility requirement of a prognosis
of six months or less to death, the forced selection of either skilled
nursing or hospice care for patients entering nursing homes from
hospitals, and limits on certain therapies such as radiation that
may help manage symptoms.

The panel identified in its statement several limitations of the
current body of end-of-life research, which, when addressed in future
studies, will advance this relatively young area of investigation.

Among the panel's other conclusions and recommendations:

Enhanced communication among patients, families, and providers
is crucial to high-quality end-of-life care.

Create new and support existing networks of end-of-life researchers
and well-defined cohorts of patients to facilitate coordinated,
interdisciplinary, multi-site studies.

The panel released its findings in a public session this morning,
following two days of expert presentations and panel deliberations.
The full text of the panel's draft statement will be available late
today at http://consensus.nih.gov.
The final version will be available at the same web address in three
to four weeks. Statements from past conferences and additional information
about the NIH Consensus Development Program are also available at
the web site, or by calling 1-888-644-2667.

The conference was sponsored by the Office of Medical Applications
of Research and the National Institute of Nursing Research, of the
NIH. Cosponsors included the Centers for Disease Control and Prevention,
the Centers for Medicare and Medicaid Services, the National Cancer
Institute, the National Center for Complementary and Alternative
Medicine, the National Institute of Mental Health, and the National
Institute on Aging.

The systematic review of the published literature that served as
a reference for the state-of-the-science panel and for discussion
at the conference was prepared by the Southern California Evidence-based
Practice Center, through the Agency for Healthcare Research and
Quality's Evidence-based Practice Centers Program. A summary of
the report will be available on AHRQ's web site  http://www.ahrq.gov/clinic/epcix.htm.
A print copy of the summary and the full report are available by
sending an e-mail to ahrqpubs@ahrq.gov.

The panel is independent and its report is not a policy statement
of the NIH or the Federal Government. The NIH Consensus Development
Program, of which this conference is a part, was established in
1977 as a mechanism to judge controversial topics in medicine and
public health in an unbiased, impartial manner. NIH has conducted
119 consensus development conferences, and 23 state-of-the-science
(formerly "technology assessment") conferences, addressing
a wide range of issues.

Note to Radio Editors: An audio report of the conference results
will be available after 4 p.m. today from the NIH Radio News Service
by calling 1-800-MED-DIAL (1-800-633-3425).

The NIH comprises the Office of the Director and 27 Institutes
and Centers. The Office of the Director is the central office at
NIH, and is responsible for setting policy for NIH and for planning,
managing, and coordinating the programs and activities of all the
NIH components. The NIH is a component of the U.S. Department of
Health and Human Services.